The Solutions

Involve patients so that health information is easily shared with researchers.

Work within PCORnet so the V-PPRN will have a much larger pool of patients and data and can collect electronic health records.

Build a strong, vibrant Network and we will get funders' attention.

Integrate patient-partners into all aspects of Network development.

What we are collecting:

We want to understand your individual patient experience. We will learn about individual patient experiences by collecting data you provide. We've made it easy for you to contribute this data to make vasculitis research happen now.

Surveys. We will ask you basic questions about you and your health. We will ask you to update this information regularly. You can update your information on your computer or smart phone.

Personal and health-related information. Health-related information and records you supply directly to the V-PPRN.

Electronic Health Records. In the future, if you give us permission, your medical records may be requested directly from your health care provider or uploaded by you.